If you had to describe your PBC fatigue to someone, what does it feel like?
Fatigue with PBC can be debilitating. How would you describe it?
I’m tired most of the time and my
legs hurt all night long about every night. Brain fog is bad , it embarrasses me a lot , I’m afraid that my family will think I’m getting dementia. They really haven’t did any research. So they don’t understand.it’s been difficult. They think since I’m on medication and my liver numbers are good. That everything is fine. But it’s not fine. Yeah... there can be such a big disconnect, and sometimes family and friends just won’t fully understand what you’re going through. That’s not your fault at all, so please don’t carry that weight on your shoulders. You deserve to feel supported, understood, and heard, even if others don’t always know how to show up for you. -Latoya (Team Member)
Yes I did get a second opinion ..I worked in Healthcare for 40 yrs and knew not to stop with out some answers.
Having a healthcare background probably made it easier to recognize when it was time to seek another opinion. I'm glad you didn't just accept the uncertainty. How are you doing now? Did the second opinion help any? -Latoya (Team Member)
Fatigue is the biggest issue I have and trying to decide if PBC is something to be concerned with. I take uridsol for the condition and my lab work.is stable..seems like physicians dont seem to.be concerned about the diagnosis I had practically beg for a fibrosis stage the disease and got conflicting results from imaging exams ..
Having to push for answers and then receive conflicting information from different tests would leave anyone feeling uncertain about where things stand. Even when doctors say things are "stable," that doesn't necessarily ease the worry, especially when you're still dealing with significant fatigue. Have you thought about getting a second opinion? -Latoya (Team Member)
